The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Negative Elisa.

Discussion in 'Lyme Disease and Co-Infections' started by Fuzzyhead, Oct 12, 2015.

  1. Fuzzyhead

    Fuzzyhead Senior Member

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    I have just had a negative elisa test on the nhs. I don't know whether to go for private bloods abroad. I have been ill for 14yrs and spent thousands over the years. I just know my family will be gutted if i spend more money and they all come back negative but i feel there's always a chance they won't.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sometimes its cheaper to attempt treating it than getting a positive test as many tests are unreliable ? ???
    Money might be better spent on a treatment trial. Many start off on doxycycline and see if they improve or have a herx reaction. Either way may indicate some type of bacterial infection, its a hard call but doxy is very cheap medicine .

    It pays to read up more on different antibiotic treatments and protecting your gut while on antibiotics.

    good luck
     
  3. Ema

    Ema Senior Member

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    ELISA testing is no more reliable than flipping a coin unfortunately. It is not suitable at all for diagnosing Lyme disease.

    All testing has limitations but if you think your symptoms are in line with Lyme disease, additional testing through a lab such as IgeneX (or the LTT) is a better way to find out if lab work would support such a clinical diagnosis.

    As @heapsreal says, sometimes it is cheaper and easier to simply try an antibiotic challenge.

    Good luck!
     
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dr horowitz has an extensive questionaire that he said is quite reliable but states its not 100%. Easy to find on a google.

    Over a score of 46 and one has a significant risk of having lyme and coinfections . My score was 71. Im sure many others have high scores.
     
  5. Fuzzyhead

    Fuzzyhead Senior Member

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    I did the Dr horowitz questionaire and i scored 104
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wow. Thats telling you something ?
     
  7. Fuzzyhead

    Fuzzyhead Senior Member

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    CFS/ME has all those symptoms anyway doesn't it?
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes, but hard to seperate them both and some drs say cfsme is lyme where others say with cfsme immune dysfunction that bacterial infections are common coinfections just like virus like ebv etc.

    Theres a few chickens or the egg, does the immune dysfunction happen first and allow infections in or do say herpes viruses cause immune dysfunction allowing bacterial infections in or is it lyme allowing co infections and viruses in.

    treat what you find i guess and if u suspect something, a treatment trial can help rule things out ie weighing up the risk to benefits??

    Theres nothing black and white but lots of shades of gray that requires some educated guesses until science pulls its finger out.
     
  9. Fuzzyhead

    Fuzzyhead Senior Member

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    I know my heads bashed in with it all. You don't know what to do for the best.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    One dam big pill that has a mixture of antivirals and combos of abx as well as antifungals. Might be hard to swollow. Lol.

    Get as much testing as u can afford but dont go extreme as alot doesnt seem accurate. Sometimes ypu wont see resulta until u get on top of everything

    bacterial infections/lyme cheapest and easiest to get compared to antivirals. You might want to try doxycycline for 6 weeks. Note how u feel on doxy and how u feel off them.

    Do your own research about different lyme forms spirochete , l-form and cyst form as well as other bacterial coinfections . Research which abx are used for which stages etc. Dr horowitz says not to use more than 3 abx at a time.

    eg many start with doxycycline and later add azithromycin , stay on this for several months as they treat spirochetes and lform bacteria . Eventually some lyme docs will add a cyst buster like flagyl or tindamax .

    Probably need regular blood work to monitor liver function etc. Many use probiotics to protect the gut and do regular candida cleanse with nystatin or herbals .

    Same with antivirals . If u have evidence of ebv/cmv/hhv6 and immune dysfunction it can be worth trying antivirals which can take several months to show positive effects. But also one would atleast wait until one was stable on abx first.

    can be hard to find a doctor to get on board. The above outline of what some do, although certain meds and doses vary.

    sometimes its essy to just save alot of links and give it a few days before you try and read them. You will be more knowledgeable than most drs on the subject??
     

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